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Posted January 28, 2012 12:01 am - Updated January 28, 2012 12:02 am

Cutting-edge medical care leads Australian family to First Coast

Cutting-edge medical care leads Australian family to First Coast

Photos by Maggie.FitzRoy@jacksonville.com Audrey Anderson, 6, plays with her mother Sue and sister Lilly, 10, at the family's temporary home in Vilano Beach. The Andersons came to the United States from Australia so Audrey could receive treatment at The University of Florida Proton Therapy Institute at Shands Jacksonville.

File photo A patient receives treatment at the Proton Therapy Institute. Proton therapy has benefits over conventional therapy in the treatment of many common cancers. Because a patient receiving treatment must stay completely still, Audrey worked with a child therapist for two weeks in order to learn to become comfortable with the sounds, sights and experience of receiving treatment from the large machine.

Audrey and her father, Wendel, play on the swing in the yard of the family's Vilano Beach rental home. Despite her daily proton therapy treatments, Audrey has lots of energy and enjoys her playtime.

By Maggie FitzRoy

maggie.fitzroy@jacksonville.com

Six-year-old Audrey Anderson has the energy of most kids her age.

She loves going to the beach, swinging on swings, and playing with toys.

But for 40 minutes almost every day, Audrey manages to lie perfectly still, with a mask over her face, as doctors shoot proton beams into her brain.

She can’t move at all — because the doctors are aiming for a tumor the size of a small plum in her mid-brain, zapping it with particles that move at two-thirds the speed of light.

Audrey, who is from Melbourne, Australia, has been living with her family in a rented beach house since mid-December so she can go for proton therapy Monday through Friday at the University of Florida Proton Institute in Jacksonville.

Wendel and Sue Anderson brought Audrey and their other daughters Lilly, 10, and Eve, 3, too, so Audrey could get six weeks of treatment. Her brain cancer is rare and inoperable, and the best treatment is not available in her country.

Sue Anderson said they are grateful for the opportunity because it has a high probability of curing her of cancer without damaging other areas of her brain.

And because the entire experience has generated “many happy memories.”

Halfway through her treatment, Audrey talks about “how much she will miss” the Proton staff when she is finished, said Sue Anderson, who discovered the institute through Google.

In March, doctors in Australia discovered that Audrey has a craniopharyngioma, a benign tumor that affects about one in a million people. After she suddenly began complaining of a headache, her mother took her to the doctor three times over the course of a week, but no cause was found. When the pain worsened, her mother took her to the emergency room, where a neurologist ordered a C-T scan and discovered the tumor.

Craniopharyngiomas are usually treated with radiation, but Sue Anderson said they were told that traditional forms of radio-therapy are not safe for young children’s brains because that type of x-ray treatment radiates the entire brain, which can cause long-term effects, including loss of memory, vision and hearing.

Since Audrey’s tumor is located in the center of her brain, important learning areas would be at risk.

According to the institute website, “protons cause less damage to healthy tissue as they enter the body,” by focusing their destructive energy on the tumor. As a result, “normal, healthy tissue receives less exposure to radiation.”

Looking for another solution, Sue discovered proton therapy on the Internet, but learned that it is only offered in several locations in the U.S. and Asia .

Realizing it was the best treatment for Audrey, Sue said she also discovered that it “is not cheap,” costing up to $300,000. And, while she has national health insurance, as well as private health insurance, “neither covers international medical care,” she said.

She decided to apply for help through her government’s “Medical Treatment Overseas Program,” which does cover international care. But, first, she had to build a case, like an attorney preparing for court.

She spent June, July and August assembling the necessary paperwork and presentations for her government, with input from Audrey’s physicians, who supported the treatment.

“I had to learn a lot about medicine and government application,” she said. “I was belligerent.”

“It wasn’t the money,” she said, saying they would have come up with it somehow. But, she wanted her government to pay for the treatment so Audrey’s case could set a precedent and make it easier for other Australian children to receive government approval.

The proton institute, which serves adults and children with many types of cancers, has treated about 350 children with a high rate of success since it opened in 2007. Indelicato said the institute, located in Springfield next to Shands, has a strong partnership with Nemours, Wolfson Children’s Hospital, and the Ronald McDonald House.

There are nine proton therapy centers in the U.S. but only a few have full pediatric programs, Indelicato said. Twenty-five percent of the pediatric patients come from other countries.

“Statistically speaking,” he said, Audrey’s prognosis “is good.”

Based on historical data with radiation in general, the cure rate is 80 percent for her condition, he said. “We hope to maintain the high cure rate while decreasing the risks of side effects, short term and long-term.”

The Australian government did agree to pay after Sue Anderson presented information about the proton therapy Audrey would receive at the institute.

She said, after researching five other U.S. centers, she chose Jacksonville because Indelicato personally took her phone calls, answering all her questions without charging a consultation fee. He also answered her e-mails immediately.

Since it is summer now in Australia (students began their summer vacation in December), the Anderson children are not missing school. Sue Anderson found the house on the Internet, and the Australian government is paying for that, too.

The proton treatments are not causing serious side effects, so Audrey feels good, and she and her sisters have made friends with other children at the proton center, where siblings can do art projects in the waiting room.

Wendel Anderson said he and his wife alternate taking Audrey for treatments. Sue Anderson owns her own retail consultant business and is able to work via computer from their rental home while Wendel cares for the girls. They often walk across the street to the beach, and take trips to St. Augustine. One weekend, the entire family visited Disney World.

Sue Anderson said they were prepared for the fact that Audrey might need to be anesthetized every day while undergoing treatment, because the therapy requires that she stay completely still. But child therapist Kimberly Eli worked with her for two weeks through play therapy to train her to tolerate the sounds, sights and experience as if it were a game.

Eli gave Audrey a stuffed toy alligator named “Ali” that wears a mask similar to her own, and she has never needed anesthesia.

The entire staff is “astonishingly brilliant,” Sue Anderson said. “The whole lot of them — from end to end.”